8-year-old Zoë has a genetic bone dysplasia abnormality disorder called OS-CS and uses a tracheostomy to help her breathe. She was also recently diagnosed with another rare neurovascular disorder, Moyamoya, which causes chronic headaches and mini strokes.
Supported mum, Britt, describes the highs and lows of being a mum to a child with a life-limiting condition and credits Shooting Star Children’s Hospices with coming to her family’s rescue when they needed it the most.
“My husband, Adrian, and I were ecstatic to fall pregnant in 2007 after five years of trying for a baby, particularly after enduring the heart-breaking stillbirth of our son, Zac, during that time. My pregnancy wasn’t without drama and I went into premature labour off and on for nine weeks before Zoë was finally born by caesarean section over a month early in November 2007.”
“As soon as Zoë was born, we heard a little cry and then nothing. After being told they didn’t think she’d make it because she was struggling to breathe, we decided to baptise her before she was rushed to Great Ormond Street Hospital in a neo-natal ambulance for specialist treatment.
“Zoë died for 6 minutes at the hospital when they were trying to secure her airway for surgery, and my poor husband was brought to the room at the time. All the while I was recovering from a c-section at another hospital, still in total shock from the trauma of having my baby whisked away from me.”
Thankfully Zoë was successful resuscitated and a tracheostomy inserted into her neck to help her breathe. Eight weeks in hospital followed to ensure Zoë was strong enough to go home, during which time Britt and Adrian were fully trained to care for their daughter and introduced to Shooting Star Children’s Hospices.
“The hospital referred us to Shooting Star Children’s Hospices when Zoë was 8-weeks-old and I remember feeling devastated that my daughter needed a hospice. But I had no idea what a lifeline they’d be for us.”
Shooting Star Children’s Hospices rescued us
Zoë and her family were discharged just before Christmas but weren’t granted any support from their local council, meaning Britt and Adrian would be caring for their very vulnerable daughter 24 hours a day. With no help and the trauma of the last few months taking its toll, Britt had a bit of an emotional breakdown.
“I had feelings of utter terror that Zoë would stop breathing at night and I wouldn’t know, so I hardly slept. We had no one; it was just me and my husband doing the constant rounds of suctioning, NG tube feedings and tape changes, day and night. I was utterly devastated by the situation – I’d been trying for a baby for years, had already lost one and Zoë was only being kept alive by a tube. I was severely traumatised and suffering from horrific anxiety attacks.
“I was stuck in survival mode but slowly and surely sinking into a black, bottomless pit of despair. I teetered on the edge of being suicidal and was put on medication by my doctor, who has since said she considered sectioning me when it was all going on but didn’t because she thought it would tip me over the edge.
“During this awful time our Shooting Star Children’s Hospices Hospice at Home nurses, Cathy and Debbie, came over to look after Zoë for a few hours. When I was having an anxiety attack they took one look at me and brought us all into Shooting Star House for an emergency stay. They rescued us. I lived at the hospice for three months recovering while they cared for Zoë. They taught me how to look after her without the fear I’d suffered with for so many weeks and that primitive maternal love most women experience at birth finally kicked in for me.
“Amazingly, while we were there they also campaigned on our behalf to get a care package from the council so we could cope at home. They secured five nights and two days a week of support for Zoë. As soon as we got that, things started to get better. Because of Shooting Star Children’s Hospices, we are sane and words can’t describe how much that means to us.”
A new diagnosis
Zoë’s breathing problems at birth were caused by a rare genetic bone dysplasia syndrome called OS-CS, which also causes motor development delay. Britt explains how Zoë, now 8-years-old, has overcome adversity to face yet another challenge.
“Zoë might have had a tough start to life but she’s fought so hard – her talking and movement have vastly improved over the years, to the point where she goes to a mainstream school and she gets on with life like any other 8-year-old, regardless of her tracheostomy. But we were dealt another blow when we found out two years ago that Zoë has another really rare life-limiting condition called Moyamoya.
“Shooting Star Children’s Hospices were there for us once again when we were in turmoil. I came out of the consultant’s room having just received the diagnosis and our Hospice at Home nurse took Zoë for me while I tried desperately to digest the devastating news that things were going to be a real struggle again. They don’t know how much that meant to me.”
Moyamoya causes restricted blood flow to the brain, meaning Zoë gets chronic headaches and mini strokes, which are exhausting for her and means she often ends up in hospital on a drip for pain relief.
“The Moyamoya also impacts other areas of Zoë’s life – the lack of blood flow to the left side of the brain affects educational learning and she has problems finding words and easily gets confused, so she uses Makaton again to support her communication. We’re seeing her mental development, with things like reasoning, slow down a touch too.
“The emotional impact of the condition on Zoë is also becoming evident – she’s starting to recognise the signs of the Moyamoya and has anxiety about being away from home when she has the beginnings of a severe headache.”
To make matters worse, the newly diagnosed condition has an impact on Zoë’s trachemostomy check-ups.
“Zoe has an operation every year to check her airways development but the moyamoya makes her at high risk of stroke when she’s under general anaesthetic, so this procedure cannot be done lightly. She’s come so far but now Moyamoya is holding her back. It’s devastating when your child has one incredibly rare life-limiting condition, let alone two and we’re in this fearful place again where we don’t know what’s going to happen because her condition is so unpredictable. You wonder what else she’ll have to contend with.”
Our knight in shining armour
Despite the family’s numerous traumas and Zoë’s current condition, Britt explains that Shooting Star Children’s Hospices have been a constant throughout.
“They’ve been our knight in shining armour whenever we’ve had a crisis – only last year they took us in as an emergency stay for 3 weeks while we were having building work that was compromising Zoë’s health – but the support hasn’t stopped there. Because of Shooting Star Children’s Hospices we’ve been able to not only cope, but have a life and enjoy it.”
The family receive Hospice at Home care, Zoë has recently enjoyed a year of specialist music therapy, and Britt and Adrian have both benefitted from counselling with Shooting Star Children’s Hospices therapists. Zoë also has short breaks at Shooting Star House, our Hampton-based hospice, for 12 nights a year.
“Everyone else gets to send their kids to sleepovers or friends’ houses but we can’t. Wherever Zoë goes, we go, because no one else is trained to look after her. So the short breaks at Shooting Star House mean we can have a social life, go to dinner or parties as a couple and just have a chance to decompress. It just means everything to have some time out.
“The hospice is the only place I feel 100% confident leaving Zoë, particularly now she has Moyamoya. Everyone there knows her, they’ve watched her grow up and they recognise her signs and when she’s not right. She absolutely loves it there and says it’s like her second home.”
“Simply put – there are no words to describe what Shooting Star Children’s Hospices means to me and my family. They saved my life and my sanity, and without them I wouldn’t be here. And neither would Zoë because I wouldn’t be able to look after her. I couldn’t have made it through the last eight years without them.”
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